Old Life / New Life

I so badly want my old life back. This thought hits me in the morning when I go back to bed after Mario heads off to school. I would love to be getting dressed and going to work. I feel it after I wake up. Just taking a shower, getting dressed, and putting on lipstick should not be followed by a nap. Can't stand not having energy. I long for my old life when Mario gets home from school and I don't have the strength or the clear thought processes to work with him on his homework. Oh, how I wish I could celebrate, I mean really go out and celebrate my daughter, Michelle for her new job in Public Relations and my son , Gennaro (Jay) nailing down a job in finance 3 months before graduation. Over the weekend my husband did the housework, carted Mario where he needed to go, and put up the outside Christmas Lights. Oh to have my old life - to enjoy the mundane as well as the occasions that call for celebration. I missed Mario's basketball game and with this thought I long for my old life. Tried to work-out a little, just at my home. Nausea and fatigue followed. Oh, how my life used to be different!
I am very sad that I have treatment every week! It keeps me from living my old life. Not a fast paced, jet setting, magazine style life. Just the everyday things that I once took for granted. Work, housecleaning, homework time, family celebrations, kids sports, church, and excersize seem to be the things I long for. Life before chemo - It teased me for the last couple of weeks. I continue to lament about quality vs. quantity.
For every piece of my old life that I did not appreciate, for every friend and family member that I overlooked, for every day to day task that I complained about I feel the need to be apologetic. For all were the best in my life. Lessons learned through my cancer journey have been very simple, humbling, and profound. I really had it as good as it gets.
I am not being ungreatful for the things I have now or the things I gained as cancer continues to take its course. There is a different kind of closeness with my friends and family; I am sincerely greatful for all my human interactions; the days I make it to Mario's games are never met with "oh, do I have to go"; the good conversations with Michelle and Jay are replayed in my mind over and over; if I go out to exercise or work I am taken back by how it normalizes my life; and looking at my husband with sincere gratitude fills me with satisfaction.
Today I will try to appreciate the things my new life brought me and stop feeling sorry for myself because I can't have the old life. I will do this right after I take a little nap. Posting really makes me tired.

Thanksgiving - My Saving Grace

It has been a while since I wrote but now I feel the need. I can't help but to contemplate the "quality vs. quantity" question that keeps bothering my brain. I don't just think it in those words but there are so many thoughts and questions to contemplate - all that bring me to "quality vs. quantity." These thoughts include "you are strong so keep fighting this thing", "what are you trying to prove", " does this make sense", "with a good scan I have to keep going," how much longer can I live this tortured life", " I don't want to check out earlier than I have too.", "How much more can I take", "is all this post-chemo reactions really giving me life", "these decisions are just too hard", what is best for my family"...and on and on my mind will race.
For me, sleeping is the only thing that can calm these racing thoughts. Thankfully these days sleepings comes easily, as a side effect of the chemo and anti-drugs. But it only helps me to avoid big time thoughts and decisions. But it can be such a peaceful state - free from pain, worry, and cares. So I wonder more if death will be like a peaceful sleep. Slow down brain because I really don't want to go there. So I remember that I just need to live a little at a time so that life doesn't feel so overwhelming. I've got something to get me through the month of November - I look forward to Thanksgiving. And yes, Thanksgiving at my house, as has been the tradition for many years. So I know that I will be safe in November because I've got a show to put on. I understand that the ghosts will most likely appear, but over these last couple of weeks, they have been appearing at a frightful rate anyway.
So back to where I started - "quality vs. quantity" - It just depends on the day, depends on the mood, depends upon how much reality I can escape. For I feel a very deteriorated quality of life. But now I have Thanksgiving to focus on - the holiday, the tradition, my family, the food. And yes, there will be wine to drink which can drown the sound of the whine in my heart. And as an added bonus - I have the Friday after Thanksgiving off from any chemotherapy - Thank you again Thanksgiving.

Moderation

It's 7:30 AM, got Mario off too school (I just love that kid), and I am lying here feeling a mess. I keep saying. "Get up and make yourself move" "Why aren't you working today?" Why aren't you at the gym?" "Shouldn't you be doing housework?" But there is complete exhaustion at this point. And all I did was wake up with my husband and Mario, get Mario breakfast, made him lunch, told him to brush his teeth, and kiss him good-bye. Could anyone guess...possibly 100 calories expelled. But I have no energy! I also have hair that continues to fall out in small chunks, skin that is peeling off my face, and lips that feel so swollen because I have mouth sores in the inner part. And that is only what is wrong with my head and my face! (Not even near a complete physical exam.)
My mind continues to talk with two different voices - one is telling me get up, don't go back to sleep, the day is just starting, you'll feel better if you just make yourself stay up. And at what cost - possibly a great day with me dancing on the rooftop saying that all I needed was a little push. The other part is watching me dance on the rooftop, calling me a fool, and watching me tumble down to the ground and add to my self-deprecating feelings.
Unfortunately there is no way to "will" yourself to wellness. I keep trying to do that and when it works I'll let you all in on the secret. What a great Nurse Practitioner I would be if I could teach my patients to will themselves to wellness. What a gimmick! Could they will themselves to thinness, will themselves to strength, will themselves to beauty, maybe even will themselves to equality. (W0w, Will yourself to equality - that is something to ponder, but I'll save that for another time. I think my brain is too tired to ponder right now.)
There has got to be something positive to be said for that pull yourself up by your bootstraps, a good kick in the pants to get yourself going, not sitting around feeling sorry for yourself attitude. But if you don't tread slowly and carefully then you'll end up falling off the roof that you just saw yourself dancing.
Everything in life is a balancing act. Everything in moderation. You need goals but you also need reality in those goals. This is the way I plan to get through the rest of my life. (At least this is today's plan) Set up small goals - each small goal should get you closer to a large one. Now I need a short nap - My ultimate goal is to get out of the house today and accomplish some sort of errand. How will I do this - just put one foot in front of the other. Get up after my nap, take a shower, clean all my hair out of the drain, brush my teeth, get hold of myself once the stinging from the toothpaste on the mouthsores subside, then time for makeup to cover the skin problems created by chemo, and lastly put on my red lipstick in an effort to look like I have sexy, botox injected lips instead of just covering up some of the cosmetic damage from the internal mouthsores. Within these steps I have to remember to put some clothes on to cover this body that has been recently neglected by lack of exercise.
I didn't want this post to be negative. I was really hoping it would tell everyone that I was dancing on rooftops, dressed to the nines wearing a great big red lipstick smile despite the way chemotheray and cancer dance in my body. Unfortunately I'm not there yet. I'll try to be easy on myself, and try to intellectualize the effects of chemotherapy on the body and the mind. But as all things should come in moderation but my chemotherapy has not. I've been on chemotherapy, almost consistently, for the past three years and now I have this power schedule of chemo every week. That's not moderation. That's total immersion. So now I have a bright side to end this entry. The amount of chetherapy I've had is enough to kill anyone. But I'm still very much alive, still trying to fight to have a normal life. I'm just a little slower and a little tireder than before. So the nap sounds good but I promise all my friends and family that I will be awake later finding something else to beat myself up about.

No Life

I'm watching the world go by me, trying to join in, hoping to feel happiness, wishing to feel something. But I feel like the ghost again, hovering over a world in which I am not a part. You see may see me. Today someone at Dana-Farber told me I really looked pretty, I had someone tell me I looked youthful, someone else said "can you believe it, I'd never pick you in a crowd as someone with cancer." I go to the mirror to look what people see and it is only a very tired shell of a person that wears red lipstick to appear as someone with life.
Is it all that chemotherapy in my system that makes me feel so unreal? Maybe it's the unbearable tiredness. It could be just this mad depression that I will go to my grave denying. Or could it be true that I am really a ghost. Because if it is really true that I have to have this chemotherapy every week I can never be me again. I'm so glad I got to shine this summer because the ghost that I am is not really me. The contrast is almost too sad to bear.

The Stupid Gift of Cancer

By now most of my readers should know the results of my scan. If not I will sum things up as they stand. Tumors are growing so I need more chemo. (Call me or check facebook for details) Although it is not easy by any stretch of the imagination I try to focus on the positive. I searched for something positive in my scan results so I started by thinking "at least it didn't go to my brain." But I could only recieve comfort from that for so long. Weekly trips to Dana-Farber are about to begin. Is there something positive - Oh yeah, I really like to talk to my nurses and Dr. Abrams, my oncologist, is a great guy. That thought was dashed very quickly from my mind. The reality is that because I will be on a clinical trial I will meet with research team doctors and nurses - all of whom I do not know. I guess there is something good in that because I will meet more wonderful Dana-Farber staff. How about this - because I will need so many rides into Dana-Farber I will get to see different friends and family, as I impinge on their generosity and time for rides, on a frequent rotating basis. Then I thought about the many fun times I've had with friends and family and we weren't even going to Dana-Farber for treatment. And this is where the "aha" moment hit me. It was easy and made perfect sense. I would do a type of thought stopping and substitute any negative thoughts with a happy memory from this past summer. I'd like to share some of those happy thoughts. (They are in no particular order.)

1. Michael, Mario, and I staying at the Hard Rock in Las Vegas. We were really rocking.
2. Inside the Hoover Dam with Mario and Michael. Mario was so fescinated he was able to tell you exactly how the generators worked when we finished the tour.
3. Also the helicoter ride over Lake Mead and the Hoover Dam. I was with Mario and he was speechless with awe. And as his mother of his eleven years, I have never seen him speechless.
4. With Mario and also with Maria, her two boys and my brother-in-law Carl- Aerosmith at Fenway. I reminded Mario that peole always remember their first concert. His memory will be Aerosmith at Fenway with his mother!!! I think that is pretty funny.
5. Early summer, I was invited to Betty's pool. Of course, I took the liberty of inviting Kathy. Mario again was with us. I brought a bottle of wine. It was 1PM...well fast forward to 7PM, Betty, Mario, and I still at the pool with three empty bottles of wine. Mario was just very polite asking "Mom. when you finish that glass of wine will you please come in the pool with me.
6. Michelle and I had quite a few days of shopping our "special stores."
7. With Joann met Sarah in Kittery and had such a nice supper, overlooking a little ocean inlet.
8. How can I forget Baltimore - Jen, Joann, Anna, Lisa, Irene, and myself - we ate, drank, and laughed over and over again. By the way, Joann was very brave and with some assistance from ativan and friends she flew for the first time in over a dozen years.
9. Anna, Carole, Lorraine - we had wine and or'derves with Debbie on her front porch. The view - my house. You don't have to travel far to have a nice evening.
10. Another Magical evening with Maria on Fourth of July. There was sangria, food, Michael, TJ, Nick, and Carl. I also made a new friend. Fireworks, friends, food, and family are a priceless combination.
11. The many weekends down the Cape, spending time with my kind and generous in-laws (Adeline, Gerry, Sofia, and Ernie) and my beautiful neice Jenna and handsome nephew Evan. Family has been everything.
12. My brother Steve turned 50 and my mother turned 80 this summer. A family backyard barbecue at my parents was a great event.
13. My gorgeous 17 year old neice Angela was baptised into her Church. I missed the Baptism, I was very late for the party but I had great conversation with my brother, his wife, and two of their friends from their church. And I think I might have convincd someone to stop being afraid and to get a screening colonoscopy.
15. The Lea Sophia jewelry party that never was - The jewelry lady cancelled but Lisa still hosted her party without the jewelry but with plenty of food, wine, and friends.
16. I told you this list is in no particular order - I'm back at the Cape, it is beginning of summer, the beach is crowded, so everyone sits as one happy group. Corona Lights (the signature drink of my summer), and all my Cape friends and family...This was a perfect beach day.
17. I managed to get five flat tires this summer - one on the way to the Cape, one on the way home from the Cape, one on my way to Church, and two on my way to the gym. Thank you Triple A, Jimmy (Tammy's husband), Dom, Julia, Michael, and Michael again. (Not a fun memory, but a memory none-the-less.)
18. Seeing Michael Flanagan (mrf) perform. His proud mother, his beautiful sister, my beautiful daughter, and her devoted boyfriend were all there. Michael was playing the piano and at that point a transvestite was singing. I looked at my daughter and said "Being in a gay bar, with my daughter, her boyfriend, and friends from the Cape, watching Michael play with a drag queen singing has to be one of the oddest, funniest, and happiest memories of the summer.
19. Meeting Michelle for lunch on Newbury Street - I got through the security in her building just by saying that I know she works in administration, she has long dark hair and she is very, very pretty. The security guard knew exactly who I meant and he sent me to the fourth floor.
20. Now I'm back in Vegas - so sorry for the confusing list. My son Jay and three of his friends met us there. I did not see Jay without a smile on his face.
21. (We'll stay in Las Vegas) Riding thrill rides with Mario and Michael.
22. And visiting the pawn shop where "Pawn Stars" is filmed and seeing the old man. That was quite a thrill to see a real movie star.
23. I'm going to add "working a lot" in my happy memories. Anna, Nick, and Vivian are the greatest people to share an office with. Nick and I worked on "Chlamydia, the Musical." Vivian and I learned that a ride in my convertible at lunch time rejuvanated us for the afternoon. And Anna we are more beautiful than Nick. Oh yeah, we saw patients as well.
24. Anna taught me how to do minor surgery - Does anyone need an ingrown toenail to be cut?
25. My friend Nancy, her baby is very sick with cancer - that is very sad, but going out for tea in China Town and having dinner at the Horseshoe Cafe were supportive times for the both of us. We also had more than a few laughs (like normal people) as well.
26. You can't have a summer without the Red Sox - Michael and I went for our 26th wedding anniversary - Yeah!! Then I went with Vivan and Carol from work and my son Mario. We missed the top of the first because we were running late and when we got into Fenway the score was 6-0 Reds Sox losing. I continue to cheer when I see Tim Wakefield.
27. The Fisherman's Feast where Michael, Mario, and I went with Deb and Bruce and met up with Maryann and her family - a wonderful reunion and celebration of Michael's birthday.
28. St. Anthony's feast where I met many of my North End facebook friends. And seeing Frankie-I love you! And you bear part of the responsibility of getting Michael and I together. And in pure Frankie style, said to my daughter's boyfriend Travis "you owe me." Stephanie - great to see you out of gym clothes.
29. I also can appreciate feeling healthy and strong. Steve, Chris, Melanie, Drew, Krista, and Susan (who I feel I have to include) were all part of my "work-out happiness at 6AM.
30. Lunch at the Langham with Maria. It's always magical when I'm with Maria.

I'm sure I missed some of happy times in my life with a chemo-free summer and missed some of the names that should be in this post. But I am only human. If I wasn't human I wouldn't have this stupid cancer. So I'll end this post, put on another application of red lipstick and smile as I review this summer. Sometimes bad things open your eyes really wide to the good things - Could that be a gift from cancer. Even if it is, I believe from the deepest part of my heart and soul that cancer is still stupid.

Opposite Emotions

I really feel I need to write this now but I really feel that I need to rest my mind.. I really feel the love and support I get from family and friends and I really feel empathy for those that don't have it. I really feel that my life has had (and continues to have) a purpose. I really feel that if given more time I can always upgrade that purpose. I really feel that this world can be cruel and unfair but I really feel that there is something better after this. I really feel pain but then I really feel comfort. I really feel happy but feel sadness looming over me. Opposing emotions!!! Just what the f*&k do you do with them????? Oh, that sounded a little angry but it is an honest question. Let's just say that I am frustrated because I can't find an answer that will make me happy.
I've been squirming in my seat in an effort to find my comfort zone somewhere in the middle. But what I've decided over the last couple of days is that there really is no more comfort zone. Coping with the reality of a terminal disease has made me too in tune to how I feel. I get flooded with thoughts and feelings, not just randomly but simultaneously. The more I try to beat the sadness down, the farther in sadness I sink. The more I want the happiness to sustain me I find myself in tears.
Now here comes the part I really don't understand. I thank God for my turmoil everyday. I am alive and I really feel. I really see with eyes so open. But with that comes a price because I feel that I see truth. I see the truth about myself, my relationships, my life's goals. Lately I've been able to see the world go on without me. It brings some feelings of joy and happiness. I see that the world doesn't exist just because of me. I see that there will be lot's of fun times and new memories after I am gone. Life will not stop. I experience both sadness and happiness when I face the realities of life after Rosanne. I am ecstatic to still be alive and fighting but I am horrified at the thought that I will be saying good bye! But I find comfort in the thought that I will never truly leave you. My spirit will remain and I want everyone to share in that comfort. (Or maybe I just fantasize it is a comfort)
With that I will end this post. I began with a sense of anxiety. Writing and sharing gives me a sense of peace. And again I find two more opposite emotions.

A Glorious Beach Day

It feels the best to feel completely alive! I just don't know how to explain it. My brain is as it should. I am having so much fun. Almost every one of my senses are active and acute. (I say almost because I always have that lingering neuropathy in my fingers. I guess nothing is really perfect.) But at the beach this weekend - I really felt the beach and lived the beach for the first time in a couple of years. Chemotherapy can really deaden your senses - but not this summer!
Now back to the beach. I really heard the ocean and all it's power again. I smelled the sea air and even the smell of seaweed brought a smile to my face. As there were complaints of too much seaweed on the beach I was able to chuckle and think "if that is your biggest annoyance then let your life go on." My ears were filled with muted conversations, squeals from children and adults alike as they ventured into the warm ocean water, radios blaring our beloved Red Sox' game, and the clear voices of friends and family making conversation and offering food and beverages. My eyes were wide open to look at the faces of new friends, old friends and family members all a year older and a year wiser, babies experiencing the sights and sounds of the ocean for the first time, and my beautiful strong Mario swimming out to the bouys with such stamina and confidence. Then how about the tastes of the beach. Yes! there are tastes. How about the ice cold Corona Light topped off with a lime, the salty snacks that everyone always seems to share, and the fresh fruit Ahh, nothing but refreshing!!!!! I felt the beach - I felt the pebbly, hot sand under my feet and on my hands, the cold of the ecean on my toes, that rock that you step on. Ouch, but oh such a good and familiar ouch. Then the sun, the wonderful, awesome feel of that miraculous ball of fire 93 million miles away! And who could not love the hugs and kisses of friends that we think about all year but tend to see on a seasonal basis. My senses were completely alive even though there was a little haze on my brain, not from chemo, but from the couple of bottles of Corona Light (comlete with lime). A haze that should be there on such a glorious day at Popponeset Beach.
As I was sitting there elated in my own world, some sadness with intertwined with warm memories crossed my mind. There were peole from years past that weren't there - Mr. and Mrs. Meuller who always took their late walk down the beach - Mr. Meuller who passed away a few years ago, then his wife not soon after. Then there were the Connely's. Mr. and Mrs. Connely were permanent features enjoying their house on the water. Both gone but the memory of them sitting on their deck, overlooking the ocean, greeting all as they entered the heavenly world just on the other side of the sea wall. Then Megan's father, Mr. Halloran. Although he has not been with us on this earth for many years his smiling face and talkative style passes through my mind. Jim Laroo, so young when he died. Husband of Lori, father of Greg and Kate. I remember many years ago about hearing the news of his brain tumor. - unable to do or say anything that could make things better. But I can still see him playing on the sand with his kids and mine and probably a few kids he didn't even know. Muriel Wade - another beautiful woman - she opened the beach, first one down there. Long gone but never to be forgotten. I think of the DeSimone's, Vera and Ted with memories that would make you cry because you felt such a connection. Vera, who never really went to the beach, and Ted, standing at the top of the seawall stairs as if overlooking his kingdom. And this year is was George Harris, Sr. Although sick for the last couple of years, he passed away last week. Friend, father, and grandfather. Physical prescence not there but his spirit will always live.
My senses were open, my thoughts were alive, my memories so clear. I thank my mother-in-law-and father-law for their foresight into the next generation in keeping their house at the beach not only for them but for their children and their spouses, their friends, their grandchildren, their granchildren's friends and on and on and on.
Although I have not traveled the world I cannot imagine a place more awesome than Popponeset Beach. A big thank you for Dr. Abrams, my oncologist who gave me the summer off from treatment so I can have "quality of life." He has a great understanding of quality vs. quantity - one that I share so immensely. Yes, I was there yesterday, at Popponest Beach, sporting my red lipstick and a periwinkle color two piece suit with my ghost right there sharing my whirling, hot, and sensational Corona laced mind.

Living in a Delusion

I think I am living in some sort of delusional world. I was told I had a terminal cancer 2 yrs. 8 months ago. I was really sick. Then I had surgery and I was sicker. Then I had a portacath placed for chemotheray and I was scared. Then I started chemotherapy and I was sick. But I fought and fought and would do my best to feel good in between treatments. In my delusional world I would feel great everyother week, not realizing how sick I really was (am). I enjoyed vacations with my family, vacations with my friends, holidays that I hosted, holidays that I didn't host. I've gone out to dinners, laughed a lot, increased my exercise progam, and continued to work. I'd put that red listick on and strut around. I would feel like life is pretty good. All the while I would keep referring to my delusion and ask the questions "How can I be sick? Do I feel like a woman with a terminal cancer inside my body? Do I look like a woman with a terminal disease?"

I'm on my quality of life chemo break and am loving it!! I'm living my delusional life of not being ill. It's much easier when I don't have chemotherapy to think about. I'm making use of every minute. I don't want to waste a second. Many times throughout this early part of my break I've asked again "How can I be sick?"

I'm wishing to live this delusion until the end. But there are times when reality sneaks in - that little pain on my right side, the curly hair on my head, on Sundays at Mass. But most often I live the delusion of health. Everytime a commercial comes on TV about a cancer center I say cancer is for other people, not me. Everytime I feel that little pain in my side I blame it on sit-ups, and during nighttime prayers when I pray for others with cancer, not thinking to pray for myself.

But something happened while I was at yesterdays Red Sox game. Pre-game ceremonies included a tribute to the riders of the Pan-Mass Challenge, a fund-raising bike-ride across Massachusetts to benefit the Jimmy Fund. I turned to my husband and said "Do I really have a disease that is so bad that billions of dollars are raised for the goal of finding a cure?" In my mind, I felt a silence and a little chill run through my body on a glorious sun-filled afternoon at Fenway Park. I think at that moment a little reality snuck into my delusional world. So there I sat - wearing a tank top to to show off my new-found muscles, with styling goup in my hair to show-off my new found curls, leopard print shoes to show my style, and red lipstick that adds to my smile and the reality of my life was bringing it all to an ugly state. I looked at myself and thought "what are you trying to prove?" I looked at my husband and felt like crying for his loss. I was never so happy to hear the words "PLAY BALL". I was snatched from reality and put back into my delusional world. And what a great afternoon it was!!!!

In a New York Minute

In the blink of an eye my happiest moments turn into such sad feelings. Every laugh that I have turns quickly into tears. Even a simple smile makes it way upside down and turns into a frown. You see, I am living day to day, moment by moment, trying to take in all the day has to offer. But everytime I feel joy then I become sad. I am not able to sustain the good feelings. When I think I am loving life then I think of losing my life - very sad indeed.
I was playing with my beautiful son Mario this weekend. We were laughing, being silly, acting like we were the only two in the world just loving each others company. It was a moment that made life worth fighting for. But then he said "This is another memory that I will have when you pass away." Silence, sadness in our hearts. But in that blink of an eye we were back to our silliness.
So now I realize it can work both ways. I can turn off my sadness because there is more happiness to enjoy. I wish that is was as flowing as the "happiness to sadness" feelings. "Sadness to happiness" requires effort. Hapiness to sadness just happens. My son Mario is so brave when he faces the sadness he feels but goes on to live his life carrying his great burden. He has taught me a lot and just keeps teaching me about how to stop my sad thoughts and just move on. So it's happiness to sadness and back to happiness again. It's a cycle. Thank you Mario for showing me the way back to my life - to live for the moment.
Oh how life changes in the blink of an eye. How quickly parents who teach their children become parents who are taught by their children. In a New York Minute everything could change. How those lyrics by the Eagles ring so true.
One more thing - I love you Mario (And that is one thing that will never change even after I pass away.)

I'm a ghost again. Watched my husband and son get ready for a wedding that was on MY side of the family. But I'm sick with Chemo. I can't go so my ghost get restless and went anyway. Saw my family asking Michael "how are you doing?", Are you doing OK with Mario", "Is it hard to live alone?" Michael was right to the point in answering these questions - "no", fine,", "Not so much hard but different." As he's answering the questions his mind is not there. All he keeps thinking about is that he just buried his wife last week, what am I doing at this "f#$%ing wedding!" My ghost yells "I'm with you baby but I miss you terribly." You see that when I'm a ghost nobody can see me or hear me but somtimes they feel your prescene. I think Michael did because I saw him smile for no apparent reason after I said those words. Be it me on this earth or my ghostly spirit Michael and I will always be connected. Our life together has been fun, stressful, full of suprises, complicated, and deep. We survived major crises and we lived through my illness to the very end. Dear Michael, if you can feel my spirit or hear my words I want you to know that I will always love you and my ghost will always be there to support you. We will stay connected forever.

Irony

Everyday that I work have the privilege of seeing pieces of the lives of others. Many of these people live uncertain lives in what I feel is a very uncertain world. Very often I wonder what drives them to go on, what makes them successful, what makes them resilient.
These people have names, faces, and feelings. Are they American born or immigrants. If immigrints are they legal or illegal? Are they litterate or illiterate? Did they graduate fom college or did they stop school in 5th grade? The truth is, I really don't care what the answers are to these questions. They are all human beings in need of some sort of "health care" that I have been destined to provide. Social statistics are irrelevant.
In this blog I don't feel the need to talk about my cancer. I have been given many gifts - intelligence, compassion, tolerance, and patience. These gifts are what has allowed me to do the work that I do and as a result of my vocation to stand in awe of those that suffer, survive and even come out on top. I stand to learn a lot from those that elevate me to a status that I do not feel worthy. Isn't it ironic?

Thank You!

Gurgle, gurgle, gurgle goes my stomach, tingle, tingle, tingle through my fingers and toes,, ouch, ouch, ouch evertime I brush my teeth - just sounds of my everyday life. Thank you chemotherapy!
Every other weekend losing 5 days of my life - Thank you chemotherapy!
Loosing my hair then having it grow back different than my own - Thank you chemotherapy!
Being too sick to attend events and parties - Thank you Chemotherapy!
Anixiety to the point of insomnia every other Thursday - Thank you chemotherapy!
Having a port-a-cath implanted in my chest that is a constant reminder of my disease - Thank you chemotherapy!

Do I sound angry? - maybe. Do I sound grateful ?- I think not! Do I sound sarcastic? - most likely.

Have you ever thought you couldn't live without something (or someone). Usually it's a material desire, a beloved friend or family member, or a God of some type. It could be any type of want. In any case when I've ever said I can't live without something it is usually a positive image.
Now I have another "can't live without". This one I didn't choose. This one is not positive, but I'm told it is the only thing that will keep me alive. So I'll say it out loud "I can't live without chemotherapy." Why? Well just let me say "Thank you cancer!" Stupid Cancer

Advice

I want to write something but I'm not sure what to write. I know I am tired of thinking about my medical plight and I'm sure there are many that don't need to hear about it right now. Everyone has their own worries and sorrows. So today I am thinking of you. I will share my secrets of how to feel good when you feel you just can't take anymore:

1. Pray and allow others to pray for you - a sense of comfort will surround you.
2. Keep your eyes wide open and notice children, animals, nature, and the human face - you will continue to see beauty.
3. Spend time with friends and family - you will have a guaranteed chance to smile. (Just as an aside, it does not have to be face to face. E-mail, facebook, text messaging, and phone calls also count! They have the same effect.)
4. Excercise and eat healthy - you still have some control of your body and you'll fit much better in your clothes. By the way, I consider chocolate to be one of the healthiest foods on earth!
5. Learn something new everyday - you can still advance your mind.
6. Read good books - you will expand your horizons.
7. Watch mindless television - your will rest your mind.
8. Live for the moment, not just for the future - you will find enjoyment.
9. Always be honest - you will not feel guilty with regret.
10. Express your feelings - it will release the tension.

At most,I hope this list will help someone. Or at it's least give some insight as to how I am living my life to its fullest even though the ghosts loom over my head.

Speak the way you Feel

I'm going to try living in the oposite world today. Whatever I really feel or think is going to be oposite to what I am going to project. On second thought, I better not do that because I would never want anyone to take my words the "right" way which is really the "wrong" way. OK, now I'm even getting confused myself so I think I'll scratch that idea. I was just thinking that if I didn't tell the truth then nobody would have to hear how crappy I feel. Nobody would have to hear about how much of life I feel I am missing. Everyone would think I am doing great, that I'm not worried about the future, that I don't think about how much I miss my old self. If I spoke in opposites I wouldn't tell anyone how annoying it is to have to count down chemo weekends to see if I can make it to a wedding, a birthday party or a First Communion. I would tell everyone that chemo is easy, I'm never in pain,or that my mouth always tastes minty resh. But since I decided not to speak in opposites then the truth must be know - chemo is hard, neuropathic pain is bad, and my mouth always has the wretched taste in it from the chemo drugs.
If I spoke in opposites worse things would happen than letting everyone know my laments about cancer and chemo. I would appear to be unappreciative, uncaring, and ungrateful. So since it is not a day I will speak in opposites I need to say that I can never feel more appreciative, caring, or grateful. So today and it's not opposite day I have many thanks to give (in no particular order):
Thank you to my friends who always get me back and forth to chemo in a way that makes me feel good right up until I have to say good bye at the door of Dana-Farber or right up until they walk me back in my doorway.
Thank you to my parents who take the T to Dana-Farber just so they can sit with me while the poison goes into my system. I know it's not easy.
Thank you to all my facebook friends and fans for cheering me on and picking me up. Your words are so important.
Thank you to all my work friends who take care of me on days that I don't feel well, let me cry or complain in the back office when I need to. You have shown me an even greater dimension of friendship.
Thank you to Michelle, Jay, and Mario just for being my children and in your own ways live this uncertain life that my cancer diagnosis has given them. I am truly proud.
Thank you to my neighbors who are always watching over me. You know I need you.
Thank you to my family for which I include my inlaws - you are all true family and do things that help make my life easier through this cancer journey.
Thank you to long time friends who remain in touch and would do anything for me. You always make me smile.
Thank you to those that offer food, prayers, kind words. For without them life with cancer would be totally intolerable.
Thank you to Father Gillespie who brings me Communion on the Sundays I am sick. I feel close to God.
Thank You to Michael, my husband, who goes off to work everyday with such a heavy burden in his mind and heart. I love you.
You know what - I never want it to be opposite day because I feel it is much too important to let others know how you feel vs. hiding behind a wall of falsities. So as I expressed the truth and not the opposite of what I feel I am so, so indebted to all of you. And as I inventoried my feelings I ask myself in all sincerity "How could I ever feel crappy?"

Chemical Warfare

Picture my liver with innumerable tumors - they are all lit up and alive. They are looking to attack other organs. They are mean and nasty and want the whole body to be under their seige. The body is the battlefield and although they are confined to the liver they grow stronger as they wait for the right time to takeover. Sometimes they are cammoflaged by sleep but they still wait. They hide in the trenches. They are aware of their enemy. They know the everyother week schedule of counter-attacks. Chemotherapy-a version of agent orange. It's chemical warfare. It will fight the tumors. It will push them back. It will weaken them. The tumors are afraid. What a picture!!! I wish I could draw it on paper. Tumors retreatreating, chemotherapy attacking. Who will win this war? And at what price will the war continue?

Easter Greetings!

I think it is holidays that bring alive the ghost that I will become. It happened on Christmas and now it is happening for Easter. The ghost of my future sees lonliness for my family. Easter dinner was always at my house. This year I have treatment scheduled for Good Friday so I won't be well enough to host the traditional family Easter dinner. So now Easter dinner is everywhere! It will be a lonely Easter at 22 Kings Row this year because I am out of commission. I see this in the future as my ghostly spirit looks down from it's terrace. I will throw you down kissess in each piece of candy that hides in the Easter baskets, I will hide my spirit in the overpowering smell of Easter lillies so I can fill the room and you will remember, I will cry because the house that was so full of life on Easter Sunday is silent.
But then the years will go by and a new tradition will be made and my family will be together again. And as my ghost looks down at 22 Kings Row it sees another family celebrating Easter. I will wish them all the joy that living in that house had brought to me. Then my ghost travels back to the new family tradition. I listen and watch. I realize that I have become a story, a "remember when" and in my ghostly fantasy they are only saying nice things. I smile and smell the lillies.
Happy Easter.

The Amusement Park from Hell

It's back at the amusement park again. I went to Hershey Park last year and rode "Big Bear" with Mario and Michael. We just couldn't stop laughing. That was a fun amusement park. Made some great memories. I'm not in that kind of park anymore.
I'm in the scariest amusement park ever. It only has those rides that you can get on but never get off. It has the kind of rides that make you think you can conquer your fears only to find out your deepest fears only touch the physical depths of these rides.
It has a perpetual ferris wheel. I step on to it, secure myself, all the while knowing I'm not going to like the sensation but eventually it will stop. It just keeps on going and going, carts swinging, speed steady but never to stop. In my mind I know it could only end in disaster.
Then there is that zero gravity ride. Again, I step on and secure myself. I suspect a wild and scarey ride but then it will be over. So way, way, up I climb. I've got a view of the world. For a moment I feel so full of life with every emotion on edge. Then comes the drop. I start yelling profanities but all the while having trust that this out of control ride will stop. But it doesn't and the loss of air in my lungs, the rattling of my body, the screams from the bases of my lungs will only end in disaster.
Hey, now I see something that I am much more comfortable with. It's tha loop coaster. I've always loved that ride - Great Bear at Hershey Park was the last one I went on. As I like to refer to it, "The Great Memory." I step on again secure myself and continue to smile. As I always describe these loop coasters - "they are over so fast there is no time to be scared." Unfortunately this coaster did not live up to this expectation. The loops started and I laughed. They kept on going...three, four...five loops. Twenty, thirty, forty loops. I'm sick, I'm scared and I know it will only end in disasater.
OK. One more ride. It is named Cancer - "the slow ride to doom." This was one ride that I wanted to avoid. There were crowds around it but no one was willingly stepping on. People were being just swept in even though they did not want to go. I think the statistics on the ride say one out of five people will go on this ride whether they want to or not. Take care of yourself, eat healthy, exercise, don't drink, don't smoke. All these things work in your favor - if you do these things the less likely you will get swept into the ride. I obeyed but got swept into the ride anyway. And I'm still riding. Sometimes it's slow and steady, sometimes it is abrupt in its movement. There are times when it's going smooth but jolts me. I think I have control but I realize I am only fooled. I see some people able to jump of and save their lives. I am happy for them but sad for myself. The only thing that I am sure of, like all the other rides, this too will end in disaster.

I Apologize

I am issueing an apology to all my family and friends. Michael, Michelle, Jay, and Mario - I am espescially sorry. You suffer along with me. I've made you cry. I've made you worry. I've made you angry. You all know that I would never do anything to deliberately make anyone feel bad. But here I am - just my exhistence is causing emotional turmoil. There has been so much support, so much love, so much caring. But what do I give back? Bad news, complaints, and neediness. Here I am again. Back to chemotherapy tomorrow. I had a great three months for which I am issueing a thank you to all my friends and family. Michael, Michelle, Jay, and Mario - I am espescially thankful. But as the saying goes - "The party is over" and I am sorry. Michael, Michelle, Jay, and Mario - I am especially sorry.

It's After Me

Help me! There's a monster after me. Wait! It's a thief trying to steal my life. No, no, that's not right! It's a murderer trying to kill me. Not sure about that! Maybe it's Satan trying to test my faith. Hold on! It could be just the enemy trying to see me to my death. I can't get out, I can't escape, I can't breathe. I'm going to have to fight. What do I need for a weapon? First I need to figure out what is after me. Do I need a sword, a gun, or a crucifix? I hear people calling me - telling me to stay strong. Oh no, I see people crying - am I losing a battle - am I dying. I see blood, needles, tubing, bags of fluid. I'm scared!!! My head begins to spin then finally it comes to a stop. I focus my eyes and check out my surroundings. It's beginning to make sense. I am able to understand. I'm at Dana-Farber and my oncologist just told me the cancer in my liver is growing. The tumors are larger. Chemotherapy is my only hope. A tear falls from my cheek and I tell him I've built myself up, I'm strong...I'm going into battle to fight for my life.
So it wasn't a monster, thief, murderer, Satan, or an enemy. It is cancer that is after me! STINKING, ROTTEN, UGLY CANCER!!!!!

Worries

"Don't worry. Be happy." Ban these words. Protest against them. Freedom of speech does not pertain to anybody that sings, speaks, mutters, utters, yells, whispers or exclaims these words. Because anyone that believes these words lives in a vacuum - they must have no family or friends, no job, do not own a house or a car, and certainly do not have cancer. (Or maybe they are high or drunk) Sane, sober people would never let these words out of their mouth. Worries are a part of life for without worries there would be no anxiety, no stress, only a recreational need for benzodiazopans, and no wonderful feelings of relief.
Worry goes hand and hand with waiting. Ever wait for a child to come home, a phone call from the boy you gave your number to, the employer to call you after a job interview, the "big" envelope from your first choice college, or Santa on Christmas morning if you were a screaming brat all year. Good news gives way to feelings of elation and bad news to feelings of dispare.
I wait for tomorrow, for the results of my latest scan; a scan that was taken after 3 months of no chemotherapy. I'm worried. Good results will bring "moments" of elation. Then the worries will start again waiting for the cancer to wake up (knowing that someday it will). Bad results, well, you all know what bad results would bring. CHEMOTHERAPY!!! That's a big ugly word that fights a big ugly disease, that causes feelings of desparation. And with the chemotherapy will bring more worries. I will worry, my family will worry, my friends will worry, my doctors will worry. I will say I'm sorry to all of you for adding to the normal course of life's worries. I might even say to you "Don't worry. Be happy!" If I do then please tell me that I am full of sh#@.

Thank you God!

It's a beautiful Sunday morning! I'm just about ready to get up and go to Church. So much to be thankful for - that's right, there is so much to be thankful for in my life. I'll name some things, but in no particular order: family, friends, sunshine, intelligence, good job, good attitude, hair dye, designer clothes, thrift shops, personal training, books, Dana-Farber, cancer research, eye liner , mascara, and RED LIPSTICK! I'm sure the list can be longer but it's getting late and as I said, I've got to get ready for Church! Feel free to add - it's always good to take inventory of what makes this life tolerable, worthwhile, and/or fun. Today my prayers will be prayers of thanksgiving. Tomorrow...well, thats another day.

Pumped to Fight

I'm aiming to stay positive on this post. Sometimes it is like shooting at a target with a blindfold. I'm aiming but not getting close to the bull's eye. Other times I have the arrow in hand and stick it right in the center and through the other side. My aim is good tonight. I'm feeling strong and feeling alive. Even feeling invincible. Bring on that chemo, come on try to destroy me but I'm not going down. Cancer, don't mess with me because you'll see who you are messing with!
Working out with a trainer has lead me to this strength. I can't believe how a consistent work out schedule, complete with cardio, has been such a boost to my well being. Being away from chemo for 3 months adds to my feeling of strength but I'm not giving all the credit to my chemo break. If I did that it would mean I have no control over the way I feel. When you give up control you are bound to lose the battle. There will be a time when I will have to give it up but I assure you it will be after I've given it my all.
These last few work out sessions have been lessons learned. I can keep getting stronger. When I go back to treatment I will be well prepared to fight. These last few treadmill runs have been different too. I used to feel I was running from the cancer. My thinking has changed and now I picture myself chasing the cancer away.
I am strong - true. I am invincible - false. I am in control of how I feel and how I fight - It depends on the day. I hope to have more days like this!

Remember When

I think it is about time I write again. I don't think it is laziness. I think it is time management. With all the things there are to do in this world it is hard to fit everything in. Considering that my life has to be go, go, go taking time to stop, stop, stop and blog, blog, blog isn't easy, easy,easy. Alright! I'll stop the silliness and get right down to the post.
I've been having very sentimental thoughts lately. Especially when it comes to my children. They just grew so fast. I look at all three and get a huge case of the "remember whens" - Michelle, remember when you had the tantrum when you were about three and told me you wanted another mother and I calmly took you by the hand and you wanted to know where I was taking you . My reply, "oh honey, I would do anything to make you happy and if a new mother is what you want we are going out to find one." You have to admit that was a good one. Jay, remember our afternoon date to Pine Banks when there was ice and snow. I think you were four. We went to see if the peacock was still there and trying to take a shortcut down from that little hill we slid all the way down on our asses (I can say asses now because you are older) and we just couldn't stop laughing. Mario, remember when we were in Hershey one morning (just last summer) in the hotel and we were eating Hershey kisses for breakfast and daddy had to take the candy from us? Michelle, remember when we were in the big dressing room at Frugal Fannies and you pointed to a woman with very large breasts and said very loudly "look at the lady with the big boobs!" The whole dressing room heard you-even the lady with the big boobs! Jay, remember going to McDonald's every Wednesday afternoon and having to sit at the exact same table and order the exact same food. And the table was close to the door and everytime it opened I would be so cold. But I would never even think to sit anywhere else. Mario, remember reading Amelia Bedelia down the Cape and how we laughed when we saw the picture of how she "dressed the chicken." And Michael, I haven't forgotten about you - Remember when we were first married and we both called out sick from work and headed to New Hampshire. We walked the Flume and saw Clark's Bears.
We all have thousands and thousands of memories about growing up, raising our children, time with our spouses. I won't bore you with anymore of mine. But take this opportunity to think back on some of your favorite memories. I seem to always dwell on all the ugly things cancer gave me but cancer has given me a beautiful thing. It forced me to remember bits and pieces of happiness and learn how to rekindle the feelings. Let me add one other pearl of wisdom. You don't need to have cancer to do this.
So I'm going to stop writing and keep thinking...Michelle, remember the school picture you took when you put your own make-up on without telling me-lipstick and all. Like mother like daughter! I'll enjoy the rest of my thoughts in the privacy of my own mind. I hope you all do the same.

Psych 101

My busy behaviors are bordering on manic to help me stay away from feelings of depression. I have become delusional because being off chemo I can make myself believe that I don't have cancer. There are hallucinating dreams seeing my body being eaten by cancer. I possess this uncanny ability to run around from thing to thing, thought to thought, person to person like I have ADHD, all because I'm afraid to stop and think. I act like a victim of PTSD because the thought, smell, and sight of Dana-Farber hangs in my senses and sometimes I get thrown right back into the treatment area with a blanket over my head. I'm a walking Psych 101 text book. And I have cancer to thank for it.

Tests and More Tests

I am sitting at my computer with a drink in my hand. It's not wine, it's not champagne, and it's not even a cold beer. It's magnesium citrate. For those that don't know what this is, I will tell you it is a prep for my colonoscopy. Now those out there that have had a colonoscopy in the past may remember their gallon of Go-Lytely. If you drank that then you are my hero. This is the more humane version of it but it does the same thing. I will have clean intestines by tomorrow afternoon. The colonoscopy is just one of those lovely tests that we all should have at 50 years old. (If you are over 50 and are reading this blog and have never had a colonoscopy I am begging you to get one) But what freaks me out is that when I was diagnosed with colon cancer I just turned fifty and was planning to see my doctor for a referral to have one - my appointment was scheduled for Nov. 1st and dignosis came on October 21st. Cancer was growing for about 8 years before that. It's strange that a killer can just sneak up on you and stalk you for years without any sign and then BANG you are terminal.
But the colonoscopy is just one test out of many all with their own set of discomforts. There are blood tests. Well, my chemoport saves my veins. The port is a box approximately 1.5x2 inches and is implanted below my left shoulder very close to under my armpit. It shows as a raised region under my skin. Installation of this port was considered a "minor" surgical procedure. (It really wasn't as minor as they said.) Anyway, there are two spots on the port that can be opened with a LARGE needle then blood can come OUT for tests or chemo can go IN to make me sick...or sorry, I meant to say extend my life. Anyway, blood tests are everytime I have treatment or any time I don't feel well. Blood tests are a necessary evil of the medical world. I not only get them but I order them for my patients with great frequency.
Another test is the CT scan, comonly referred to as CAT scan. For that I get a different drink. It is called gastrographin and they mix it with Crystal Light Lemon Ice Tea. I am instructed to drink two bottles within one hour. Again, I have to say it is more humane than the barium that is more commonly used. (You see Dana Farber patients are special.) Then before they can give me the CT scan they need more contrast in my body so they start an IV (they can't use my port because the contrast material that they have to inject goes in fast and my port just can't tolerate it.) Then hook it up to a machine that gives the injuection. The machine does it because it needs to done with lightening speed while I am going through the CT scanner, a much larger machine. Medical professionals are never in the room because radiation is emitted - another reason why a machine gives me the injection. Although the test is painless I have tears in my eyes from beginning to end. It is a constant reminder as to how sick I really am.
There have been PET scans, MRI's, and constant physical exams. All not horrible within themselves but they stand for something that I still cannot wrap my head around - I have terminal cancer and these tests are to check what it has done to my body or what the chemotherapy has done to the cancer.
I am a nurse practitioner - I order tests, I order injections (even for babies), I order consults with other doctors. I hope for normal results. My patients hope for normal results. As with my own tests, I never expect normal. I pray for "status quo." (Those words taken from a previous post).
I advocate for good health care and preventative medicine. So let me complain about those tests. I'll give everyone of my readers permission to complain about any medical test that is offered. But usually the test is for your own good!!! Did I say that??? Now I will live by my own thoughts. Medical/diagnostic tests aren't to REMIND me that I have cancer but they offer insight into who's winning the battle.

I'm not going to complain at all right now. I had a fantastic weekend with a fantastic bunch of women. The Langham Hotel and Bond will never be the same as we embarked on my dream weekend. Putting together women from all facets of my life was part of my bucket list and it really happened. I mean IT REALLY HAPPENED!!!!!! It was even better than I thought it was going to be but my predictions came true. I predicted that everyone would make new friends and they all did. I predicted that everyone would look beautiful and they did. I predicted that we would make a positive statement for women in their forties and fifties and we did. (Out of the 17 there was only one that didn't fall into that category, but she was close...hi Anna!) I predicted that the weekend would be memorable and it was.
Reality set in today when I had to go into Dana-Farber and have my chemo port opened and flushed. But as I said in the beginning of this post -I'm not going to complain. I keep viewing my weekend pictures (I promise they will get posted). Those pictures will sustain me through any sadness for a very long time. I realize I have many friends that laugh with me, cry with me and love me. Things could be worse but when you have an entourage like I felt I had at the Langham Hotel this weekend things just couldn't be better.
And to those friends that weren't there because they were male, because I had to limit the guest list at some point, or because they were too young - you all make my life better. And lastly, I have so much family behind me that at my lowest points the reality is my life is better than most.
One last thought-just because I didn't complain in this post doesn't mean I will never complain again. I'm just so very thankful that I have listeners. Those friends that were with me this weekend, those that weren't, and my family will just have to bear with me. I am not ungrateful but I am only human. I send my love to all of you.

Fleeting Forgetfulness

It was music to my ears. Mario was awesome playing his saxaphone in the elementary school band. Michelle came to see him-even more of a treat. Then we were home and Jay showed up. All three of my children at the same time. I just love it!
But I'm sad. I sat around and looked at all the families at the concert. I wondered how many of them had their lives effected by cancer? How close was this cancer? Anyone in that audience battling cancer now or how many people sitting there had battled it in the past? I just wanted to be able to sit and enjoy the concert; enjoy the company of friends and aquaintences that I met during the course of Mario's elementary school life. But I just couldn't! Michelle's former 5th grade teacher was at the concert. We went to say hello to him and I asked him if he heard that I had cancer. I'm not sure why I asked that question? It just came out of my mouth. Did I want to explain my super short hair? Did I need to hear someone else tell me to keep fighting? Did I need sympathy or maybe empathy? Or is this the part of me that identifies who I am?
I'm in the audience and my mind wanders to the party I am having at the Langham Hotel. It's a gathering of friends from different avenues of my life. I am very excited about this. I am sorry it is my cancer that is getting everyone together but I am promising myself that cancer is not going to be a part of any conversation. I don't want it to be the elephant in the room. I don't want it to bring the party down. I'm going to pretend I don't have cancer. I wonder if that is possible.
I start looking around again and just as I was ready to go off into another daydream, just as I was feeling the sadness tug at my heart, just as I was getting ready to think how unfair this really is...the kids came walking in, holding their adult-size musical instruments in their child-size hands, and my son in the middle of this march with a smile from ear to ear. So just for a second I felt his joy and for that split second was able to forget I had cancer.
Now I'm home, feeling very sad but very thankful for seeing that great big smile on my beautiful son as he carried his large saxphone in his little hands. By the way, it was such a beautiful performance!!

I was just thinking...

This is just going to be a short post. No work today - but if I say no work how come I emptied the dishwasher, did a load of laundry, made a marinara sauce for supper, went over with Mario some of the things on his Social Studies test, made Mario breakfast, and cleaned one of the bathrooms - and it is not even nine o'clock!!!! Does this type of routine sound familiar. I'm not going to complain. I am so happy I feel good enought to do this.
Just one more thought on this post. Nothing earthshattering; just the truth. If my kids ever read this, even if I am not living on this earth with them I just want them to know that I love them very much, I think of them everyday, I am proud of their accomplishments, and I am honored to be their mother. It try to tell them now but I am not sure how much they listen or really hear. But one of the saddest things about having cancer is that I can see their life going on without me. I truly feel I will always be watching but I will not be in the midst of it. For that I am sorry. Although it may not be easy, they will go on and do well and for that I am joyful.
And because I have colon cancer, on their 40th birthdays (ten years before the general population) they will hear me shout from the heavens "Get your colonoscopy!!!!" Michelle, Jay, and Mario I love you very much.

Short Red Hair and Painted Face

My hair is growing back. Very short; I should say very, very, very short. Not the spikey red hair that I used to have but thanks to Richard (my wonderful hairdresser) it is red again. It is a bold step on my part to wear it like this. I get mixed reviews - "sophisticated", "i want to wear my hair like that", "at least its growing back", "it must be easy". So the jury is out. But by the time I get the final verdict it will be longer (I hope) or I'll be having more chemotherapy and probably lose it again (I hope not). But should I even care what others think!
So now with this super-dooper short red hair that exposes me so shamelessly, I add even more make-up to my face. Why do I do this? I think I keep searching for that beauty that is supposed to be within me. People tell me it's there but I keep adding paint to the outside in the hope that it will make it through to the inside. I paint my eyes - "the eyes are the windows to the soul". I know I heard that quote somewhere. So I invite my friends to be attracted to the outside but peer through my eyes to my soul.
I paint my lips so the world can see a smile. I am physically feeling better so I have been smiling more. The lipstick actually looks better when I smile. The connection between the physical and emotional self is just so close.
I wonder why I worry so much about the way I present myself to the world. Spikey red hair, red lipstick, painted eyelids are all part of the what the world sees. Do strangers even look? Do friends even notice? Does anyone see the sadness or the sickness that lies deep inside me? Does it really matter?
My friends that know me well will look through my eyes and underneath my smile. On this day the smile is real and my eyes are truly smiling - although my hair may not be as spikey as I want, my lipstick may need to be reapplied and my painted eyes may be smudged. I am among friends who have seen my soul.

I Smiled Today

I smiled tonight even when I looked in the mirror. It is something that has not happened that often. What I see is ugly, cancer, sickness and sadness. But I began to think of all that love me and care about me - do they care that I have no hair; do they care that the steroids I take for nausea added a few pounds; do they care that I have memory lapses? Chemotherapy is an awful thing that causes awful discomfort. But I'm on a break now but I live with the after effects of "insane" treatments.
But I looked in the mirror tonight and caught a glimpse of a smile. I was trying on the dress I thought I might wear for my night at the Langham. I thought of my friends that would be there - I thought of my family that are all for the idea of this get together - I thought of my friend Maria who made a small suggestion and ended up being the main organizer - I thought of the individual women that will be with me and special times with each of them - I thought of Sunday Brunch at the Langham with not only the women but other family members and friends - Wow! I thought of how amazing my life is with all these special people. Then I applied a little more red lipstick, looked over my shoulder, into the mirror and caught a glimpse of a smile as I walked away.

Get Me That Lipstick

I've worked half of my forty hour week. It makes me feel alive, purposeful and useful. I get to forget about myself and think of the struggles and sometimes triumphs of others. But then I get into my car and all the repressed thoughts of the day come flying out of my brain and are now splattered all over the inside of my windshield. The "higher" I feel during the day the harder I crash and the bigger the splatter. (Yuck! That is an awful image. ) But as I tell many of my friends - I think in pictures and the more graphic the more I can understand.
So I'm going to keep busy and more busy. Then I'll crash and splatter, pick myself up again, dust myself off, hold myself together and all the while thinking how much I need that red lipstick again to paint that smile on my face. I so desparately want to look happy when I walk into my house.
Even days off from work give no rest. I'm off this Thursday so my plan for my day off is Provider Meeeting in the morning (even though I am off from work), followed by personal training session then I have a few hours without any plan. I am in a panic-alone with my thoughts just brings sadness - what can I do - can I read without drifting - how about going back to sleep, taking a nap - shopping, no I don't want to spend money, then I'll worry about money which is not even a major current concern - call someone for lunch, tried that but no one could make it - I need to have something to fill my time - I can't stop! Relax, and just breathe. Now aren't you tired and anxious after reading that. If not, read it again without stopping for punctuation signs. That is the feeling I get everytime I have empty time on my hands. So, back to my day. After those empty few hours I meet the school bus, take my son to an appointment, go to an open house at a friend's jewelry store, and yes, at 8:30 PM I have a vision field test and a nerve fiber test scheduled with my opthalmologist. Then in my car to face the splattering until I get home and take my ativan to fall off to sleep, praying for no metastisis, no pain and no tumor growth. I pray for others that are sick...I'm off to sleep. Thank you Ativan.
Now the morning comes. Same routine with the same words - Mario, what do you want for breakfast, Mario, do you want to buy lunch or do I need to make it, Mario, here are your clothes, Mario, did you brush your teeth, Mario, make sure you put your hat on. I love that boy (I wrote "little" boy but if he reads this someday I don't want him to think I thought he was little. I want him to know that he has been nothing but a very brave boy), he gives me a reason to keep fighting not only the cancer but this overwhelming sadness and anxiety that it brings with it. Now Mario is on his way to the bus and again I say the words I say many times as I am getting ready to go to work - Where the #$^% is that red lipstick!!!

The Irony of It All

The reality has set in and I, Rosanne Ameno, have a terminal disease. I have Stage IV colon cancer that has metastisized in a big way to my liver. It is inoperable and has no cure!!!!!!!!!!!!!!!!!!!!!! There, I said it and now I lie in bed, wanting to sleep but the only way to fall asleep is to take my ativan. I have lots on my mind.
The dependence on medication that has been created is making me scared. What am I going to do? I'm not sick - I'm just a little "unwell". (Nick, I told you this would get that word in my blog) Take my medicine like a good little patient. I fight it. I make jokes about it. The flying pigs (usually morphine induced) are even getting boring. Today was my visit to the oncopsychiatrist - his position is to deal with patients with terminal cancer and help them cope with the feelings that come along with it. So more medicine. Again, good patient and take medication or don't even bother picking up the prescription.
I need to pull myself out of this funk that I am in. (I think I said the same thing a blog or two ago but this time a mean it.) So I look to my left and lying there is Mario my bonous boy, and next to him my Michael, the man I love and married over 25 yars ago. My beautiful Michelle is in Aspen for a few days, my handsome Jay went to UNH to spend the night with some friends. I love them all so much but believe it or not my family is one of the reasons I am in this space. I don't blame them - these are my slanted thoughts. "Isn't it ironic?" We are a family. I can't help but see their life going on without me. I see them as beautiful together. But I am old and ugly and just looking in . Damn it!!!! I helped create this family but I feel so dissociated from them, just watching from afar.
So I'll work towards integration because I am still here. I live and breathe and I am getting ready to go round 3 with this terrible disease. I'll just keep believing that I will live a long time. I'm not sick, just a little unwell. I will fight forever, right through old age. Maybe I should delete my first paragraph. Isn't it ironic?
Michelle, Jay, Mario, and Michael - if you are reading this after I am gone, just remember that I love you all very much and really wish I could grow old with you.

("Unwell" - taken from Match-Box 20)
("Isn't It Ironic" - taken from Alanis Morrisette)

Good night everyone. Tomorrow is another day. Rosanne

LIFE vs. life

I feel that blogging my thoughts not only gives me a way to express myself but has the potential to become a living memory of me. I am sorry to express so much sadness in most of these posts but I can feel the "life" that I was given is slowly slipping by. I have the word "life" in quotes because I want the personal meaning to be exposed. By "life" I mean passion, spunk, pizzazz, personality. I guess what I mean is LIFE.
Day after day has been going by. My brain is full but my body cannot feel what my brain is telling it to. My body is so broken. It hursts to eat but it hurts to have an empty stomach. I whimper beyond control. The neuropathy is bad. My chemoport is so very ucomfortable. I cry when I see my children and husband. I cry when people are nice to me. I have such love for all those that support me. I've learned to make sure that I tell friends and family that I love them. I'm planning a party for myself. I want people to believe that I can still enjoy myself like the rest of them. Sometimes I wonder "who am I fooling." But in the same thought I realize I need to smile and laugh for there is no life without it.
So to thread the thoughts of this blog together - I feel the "life" in me slipping away. Ah, that sounds a little better than "life" slipping away. And as I wrote the words of the previous paragraph I realized that even though I feel it going I still hold on to it. The irony in my emotions keep me intrigued. I wonder what I am going to feel next. This I like.
But the physical pain and discomfort of all this is what is getting to me now. I thought I could handle it but I am learning quickly that I can handle just about any feeling that comes up. But to be in the midst of physical pain and trying to deal with it has got me stumped. The thought about numbing it with thoughts and feelings of flying pigs sounds good but then I lose the "life" that I so desparetely need.

Sadder and Sadder

I started this post talking about my cancer but then I erased what I wrote. But I kept the title. I feel sadder and sadder re: the results of this election. I will say no more but I feel that the results were based on anger, and self righteousness vs. the needs of all. And I will ask just one question for anyone who reads this to ponder - Where are the values that were instilled upon us by many of us who have immigrant grandparents? I pray that there are not as many as I expect there to be whose life will challenged in a negative way due to this election. For all those that read this and don't understand - I just need to say that rather than sucumbing to pressures of many friends and family I voted for what I thought was right!!!!!
Don't worry, I'll be back to blogging my laments of cancer and chemotherapy very soon! I need to wallow in this sorrow a little longer.

Sick of Feeling Sick

I'm going to spend this little block of time in complaint mode!!! Just skip this blog if it will bother you. I'm sick of being sick, I'm tired of being tired, I'm angry that I'm feeling angry, and I'm sad about how sad I am. There, I said all my complaints in very few words.
But if you chose to skip this passage then you are missing the best part. THANK YOU for listening. It is a very hard place for my friends and family to be in. And those that I trust have the "pleasure" of listening to me the most. I have been wondering out loud to a few members of my society of friends (Not the Quakers - I keep them for my breakfast ) as to whether I would rather die now than keep up this gruesome fight. There is something very peaceful when I think of dying and I am thankful for my belief in a very peaceful afterlife. But just giving up makes me a wimp and at this time in my life I don't want others to think of me like that. Ever read obituaries from those that died of cancer . They always stress the "brave fight." What if mine reads "She was quite wimpy in her battle..." My family and friends expect the fight to the finish, it's not over until the fat lady sings, it ain't over until it's over. Let me just ask one question - What if I just can't do it anymore??? Here come the tears, oh, oh they want stop, please dear Jesus, just help me to stop crying. I cannot hold these tears back from those that can understand.
So another way to look at things - taken last evening as advice from a sincere friend -(paraphrasing his ideas) I'm going to fight the depression I feel because once I get hold of the depression I might be in a better position to fight the cancer. So I'll continue to cry until my eyeballs stream from my brain and once the tears have flooded my existence I will pick myself up, dry myself off and get back into the ring with a different sparring partner. And once I defeat this emotional bastard that plagues my soul I will be ready to fight the real enemy that plagues my body.

Blabbering Emotions

Emotions run wild. Up the stream, down the mountain, under the tunnel, over the bridge, across the street, in the sewer pipes, over the rainbow...Ever think one way and feel another all at the same time? Did you ever start a fight only to get a hug? How about feeling like crap but dressed to the nines. Ever feel you are so happy you can touch the heavans or so low you can feel the fires of hell?
I've dealth with these conflincting emotions - happy but angry, hopeless but hopeful, spacey yet so grounded, so dead but so alive.
I drive myself crazy trying to make sense of them. I stay up late, I need to use ativan, I try to talk it out but most of the time nothing comes out of it because how do you talk about how you are feeling when you really don't know? Cancer Sucks! It leaves you totaly preoccupied. A simple question like how you are doing becomes a blabbering disertation and in the end you said nothing more than "OK". I'm saying good night because I'm beginning to blabber right now!

Return from the Other Side

I return back to work tomorrow. I really like my "Nurse Practitioner" part of my life vs. the "patient" part of my life. However, I'm very sad to say I will be a cancer patient until the day that I die. But you know what - I can say the same thing about being a Nurse Practitioner. But tomorrow feels like another return from being a patient. So watch out Lynn Community Health Center - I'm back, I'm strong and for the next eight weeks I hope to be out of my patient role!!!!!!!!!! Good Night now, need some sleep to be ready for my return debut....

In Memory of Auntie Fanny

Auntie Fanny passed away a few days ago. Her wake is over, funeral Mass is said, her body is laid to rest at Holy Cross Cemetary in Malden, Massachusetts and her soul is up in heaven. Everything was done in eloquent but simple style which is nothing but a copy of the way she lived. Auntie became my aunt through marraige but she was my aunt in the purest sense of the word. She was very frugal as most people are that have grown up during the Great Depression, but generous to a fault. She was generous with her love, generous with her prayers, generous with her food, generous with her time and generous with any money that she had. She loved her family unconditionally. When she heard I had cancer this stoic woman cried. At the birth of all three children of my children, as each one came along she took pride in being the oldest and that new born baby having a chance to be the youngest. The more I write the more I cry. Some of the tears are sad tears because I will not see her on this earth again, some of them are tears of joy because I had the privilege of being her niece, and some of them are tears just because my words cannot describe my sense of loss.

I'm Back!!!!!!!

Hey, I'm here, I'm home, I'm out of the hospital. I'm alive, I'm going to be off chemo for at least three months. Let me say one thing. I deserve this vacation. I worked very hard, submitted my body to physical toture, and shed many tears for this vacation. I want more...I dream of hearing the words "you are cancer free" or "you are in remission." These words are never meant for me. My excitement comes from "your tumors have shrunk" and now I get a hiatus. 12 weeks or three months - same thing but which one sounds longer because that is what I am hanging on to.
Just spent last 5 days in Brigham and Women's Hospital with bowels either stopped up or emtying like a faucet. And the pain of it all! But not only abdominal pain but flank pain which radiated right into my groin - and guess what that was - How about a kidney stone trying to pass as my bowels couldn't make any sense of what they needed to do. Wow, a double whammy!! When it rains it poors!!! My brain was filled with flying pigs in order to stop the pain.
So narcotics stop the pain but cause my bowel to constipate. So as a good patient that all nurse practitioners should be I began taking colace and eating a normal diet. OhOh here comes the poo-poo train. Back to Lomotil and very quickly and without warning this poo-poo train got stuck in the tunnel. Time for the colace and the green leafy diet. The poo-poo train is now on a runaway train so back to lomotil and white foods. By whites food I mean foods that are white in color. White bread, white rice, white potatoes. You get this colorless picture?
So here I sit. I was out for most of the day but unfortunately I had to scope out the location of the nearest toilet and had a small bottle of spray cologne in my bag just in case. Well it worked all right! Again here I sit and sad to say the poo-poo train continues on the runaway track and almost caused me to have to hide my face in shame.
So on goes the battle!! I keep getting knocked over and each time I express the famous words of Jack Nicholson in "The Shining" - "I'm back." But each time I scream those words my voice feels deeper inside my chest and I feel that it is much harder to climb up through the bowels of hell.

Hopefully I be more positive on my next blog. Love, Rosanne
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